Gaining access to unspoken narratives of people living with dementia on a hospital ward—A new methodology

Abstract

AbstractBackgroundThis is a methodological paper that aims to advance the conceptualisation of participatory research by focusing on the value of capturing and understanding movement as a vital means of communication for older people with dementia in a general hospital ward. Qualitative research involving people with dementia tends to be word‐based and reliant upon verbal fluency. This article considers a method for capturing and understanding movement as a vital means of communication.MethodThis narrative enquiry is underpinned by the model of social citizenship that recognises people with dementia as citizens with narratives to share. The study focused on spontaneously produced conversations that were video recorded and analysed through a lens of mobility. This enabled each participant to share what was important to them in that moment of time without always using words.FindingsThe study findings showed that people with dementia have narratives to share, but these narratives do not fit the bio‐medically constructed model that is generally expected from patients. Utilising a mobilities lens enabled the narratives to be understood as containing layers of language. The first layer is the words; the second layer is gestures and movements that support the words; and the third layer is micro movements. These movements do not only support the words but in some cases tell a different story altogether.ConclusionThis methodology brings attention to layers of communication that reveal narratives as a mobile process that require work from both the teller and the listener to share and receive. Movements are shown to be the physical manifestations of embodied language which when viewed through a lens of mobility enable a deeper understanding of the experience of living with dementia when an inpatient. Viewing narratives through a mobilities lens is important to the advancement of dementia and citizenship practices.